Be the Best Advocate for Your Child

Originally presented October 21, 2019

by Lilly Jackanin, LCSW and Carmen Lizzette Camacho, MA, LSW

Advocating for services, educational or medical, can be frustrating and confusing. Here are some tools to help you advocate for your child while developing relationships with service providers.

Transcript

Sheila

Welcome, everybody tonight for our Lighthouse Guild tele-support call. We are very lucky to have Lily and Carmen presenting tonight on being your best advocate, which is, as we all know, a challenge and we need extra support and knowledge that they’re going to share with us today. So thank you for coming. I’m not going to read your bio if you want to say a little bit about yourself, Carmen and then Lily when you speak so that they know who’s talking. They have your bio, but just a little refresher. Thank you. Go ahead.

Carmen

I’m Carmen Camacho and I am part of the Hermansky-Pudlak Syndrome tele-support group.  I am a social worker by trade and as part of the HPS network, I help families understand diagnosis. I’m also part of NOAH’s first responders. We help families understand when their child is first diagnosed. I also help families that had a diagnosis venture through the medical field. When you are first diagnosed with any condition, most of us don’t have a lot of experience with the medical field or medical professionals, except going to a pediatrician or a PCP. So, it’s kind of a science to deal with medical professionals. So, that’s my role.

Lilly

I’m Lilly Jackanin. I’m also a social worker. I’ve done a lot of groups. I have provided psychotherapy for the visually impaired for many years. I worked for Lighthouse International, and then later on, I moved on to work for the Guild and then when they merged, so here I am, back with them with Lighthouse on some level. I also do work for Catholic Charities. I do a support group for visually impaired immigrants that are trying to assimilate into our culture and system, and helping them through their everyday life. So, that’s what I do. I’m a part time worker, and I am retired.

Carmen

The next slide was just showing who we are and what we do. I always like to show this because it’s kind of, you know, how we parents or adults when we are anxious, and we think we have it all under control. And we’re like, “Oh, I got this,” but then the world can see that we’re kind of losing it. That’s usually the way I think of myself when I have a stressful situation or medical situation is like, why do you think I’m stressed? I don’t know, that’s actually like looking in the mirror. So, it’s a very normal feeling. And it’s a very common feeling. And I think all of us have it at some point.

Now, when we get a diagnosis for the first time, we, as I said before, usually have contact with doctors, mostly for a physical once a year. When we get a diagnosis that is either rare or very atypical. We got to be more careful and picking with our doctors and picking who is going to treat our child. That requires a little bit more research and finding out who the experts are, and I like to call it like the dating game. You have to go prepare to meet your doctor. You have to remember the doctor is going to provide a service for you, because we sometimes get intimidated. And we’re like, oh my God, you’re busy. They want to know right away, like, what is your issue, and sometimes you feel rushed.

I always tell parents, the first appointment, it’s like, going on a date. You got to find out what the doctor is like. It’s like an interview. You have to ask the doctor how well he works with other specialists, like for example, with HPS, if you have multi-symptoms, like with other eye conditions, you have multi-symptoms. So, you have to find out if this doctor is willing to work with other specialists.

Ask how they handle referrals, because you have a lot of other issues, not just vision, or cognitive issues or neurological issues. You need to find a doctor that is okay referring to other specialists. How do you communicate in an emergency? Some doctors have a group and the group all fill in or some doctors just don’t? They’re the only ones in the office- so how do they handle emergencies? How do you manage to get copies of your records? Anytime you go to see your doctor, you get tests. How do they manage that? Very important, what hospitals the doctors are associated with. How will you be able to get in touch with these doctors?

So, it’s very important that you feel comfortable asking these questions and setting time. Don’t be afraid to tell them, I’d like to interview you because I need to have a doctor that will cater for my child’s needs, and that will listen to me. Not all the time a doctor is going to be knowledgeable about your condition. Because there’s about 7,000 rare conditions, rare diseases, and that’s on top of the other number of conditions that are in the medical profession. So, to find somebody that knows everything about everything, that’s impossible. So, I always tell parents that the best way to pick your doctor is, if they said, “you know what, I don’t know about what your child has, but I’m willing to learn with you.” That’s a good sign. If the doctor tells you, “yeah, yeah, I know. I know. I know.” And then he’s asking you how to spell the child’s condition, you know, like, yeah, right. Sure, you know.

So, I rather have somebody that says to me, “listen, I don’t know”, or “I’m willing to learn”, or “I want to learn.” That’s your best bet. If you find somebody that said, sure, I understand and had a patient like that. That’s fantastic. But the chances of that happening are slim. So, don’t get discouraged because you are going to become the expert.

That was another thing. When you first have a diagnosis, I suggest to parents, read, learn, contact the association that is the advocate for that condition. You have to become the expert. To be the medical advocate for your child, you have to become the expert and learn it well. Don’t learn stuff that is wrong, and then you’re going to lose credibility with your doctor. So, in order for the doctor to have respect for your knowledge, you have to learn it well.

So, the next slide. I always tell parents or people that are starting to navigate the system to make sure that you have your own medical history. Make sure that you have information about your history, about what surgeries you have, if you have children or their siblings or their family members with the condition, the date of the diagnosis, their hospitalizations, allergies, list of medications. Have all that ready so when the doctor asks you, you know that information, you are certain to have it in front of you. So, they know what your history is.

So, before you go to the hospital or to the doctor, sit down, and you have an idea, like when you fill out these papers, and when you go 15 minutes before the appointment, you have an idea what they ask, get them ready, have them all right there, so you’re not guessing. You can go to the pharmacy and get a printout of the medications your child’s on, so you can have it with you. Call your family, especially with rare disorders, sometimes families don’t know, because other family members had it before, but they don’t know, they didn’t have a name for it. They didn’t know what it was. Ask questions and gather all that information. Next.

As I said before, when you prepare for your doctor’s appointment, you have to have all that information with you. You have to have a list of your concerns. I would sit down and have a list of your questions and make a check mark, get a notebook and write all your questions in a notebook. Make check marks when you ask questions, so you don’t miss questions.

The other thing is, bring releases. If you have other doctors and you have other professionals that are working with your child, bring releases already signed with their addresses. If you want this person to manage your child’s health, and they are willing to be a team, they all have to communicate and we’re in a time that people need releases for everything, you cannot just share information randomly, so be prepared.

One thing that I always tell people never, ever, ever leave your originals anywhere. I would prepare with your child the same way that people prepare educational files. Get a folder, get a binder, and have all your child’s medical records, all organized, and keep them with you. If they want copies, give them copies, fax them copies, email them copies, but never ever leave your doctor’s office and leave your records with them. Because then you don’t know how you’re going to get them back, or sometimes they get lost. Sometimes they just become part of the medical record and for you to get them back it’s a lot harder, so always keep your medical records with you.

Next one. One very important thing that I tell people is don’t go to these doctor’s appointments by yourself. Why is that? Because you’re getting a lot of information, you’re getting a lot of scary information sometimes. I don’t know if that happened to you, but the doctor tells you one thing, and you get stuck on that thought, and everything else sounds like Snoopy- Wah, wah, wah. The doctor is talking and you see their mouth moving, but you’re just thinking of that little piece of information that caught your attention and you’re scared or anxious about it. So, it’s really, really important to have somebody go with you that can be an extra set of ears and an extra support for you.

For example, I have HPS myself, and when I go to the doctor’s I have somebody come with me and if somebody cannot come with me, I call them on the phone and I put the phone down and I said can you listen to this conversation and I tell the doctor, “I need an extra set of ears because what we’re discussing is serious.” So the same thing with your child, if your husband cannot go or your wife, or you have a grandmother that can come with you, bring them. I think that’s the best thing you could do until you’re comfortable with the diagnosis or comfortable with treatment. I think that surprises always come up in appointments and you want to be ready. You don’t want to be by yourself.

Next. A very important thing that we try to encourage parents is to have a medic alert. This is important because sometimes either you are not with your child, or you have an event where you can’t speak right away. It’s important that whoever is in contact with your child knows what the condition is. For example, children with albinism have nystagmus. And if they’re in a car accident, and they see the nystagmus, the first thing they’re gonna think is brain injury. And they need to know this is okay, this might be part of the nystagmus. If there’s a bleeding disorder, they need to know. If they’re totally blind, they need to know. So it’s important that you have a way to communicate in an emergency that your child has a special condition. The best way to get your medic alert is to ask your doctor, what should I put in my medic alert, what are the key words that they need to know so they can attend to my child?

Next. One thing that we don’t think of is doctor etiquette. Remember that if your child has a special condition, you’re going to be with the medical community for a long time, you know, they’re going to be part of your everyday care of your child. So, we suggest to parents, we have some tips that will help you have a better relationship with your doctor. I’m not saying that if you have a doctor that you don’t like you have to stick with them. No, that’s not what I’m saying. What I’m saying is, you have a doctor that you disagree with, that doesn’t have the correct information. There’s ways in which you can part ways with them. And there’s ways that you can work with them, so they can correct the information and still have a relationship with them.

Even if you decide to go to a different doctor, the medical community is small, and you don’t want to put out there, this doctor sucks or this doctor is very difficult to work with. Whatever you do, you want to always keep your communication open. Again, understanding that doctors don’t know everything, and that’s why it’s important that you know your child’s condition and you are conscious of the correct information, so you can help them understand it.

One of the issues with special conditions is that, unfortunately, we become the experts on it. So, we are the ones that have to show the information. Sometimes the doctors that we go to for care are not aware of all the details. So, it’s part of our information. It’s part of our responsibility, and it’s frustrating, because you’re thinking I’m taking my child to this doctor to take care of them, and how come I’m the one that knows more. Unfortunately, that’s what happens when you have certain conditions. You become the expert. The same thing with hospitals – never assume that they know about the condition because you had already explained it to staff. Because for example, in the emergency room, staff changes, you know, there’s shift changes. And whoever comes at three o’clock might not know the information, you might have explained it to somebody at seven o’clock shift and they know about it, or they might have had somebody that they might have treated somebody with that condition. When shifts change, new personnel come. So, unfortunately, that’s part of advocating for your kid. You’re going to feel like you’re repeating yourself all the time. But that comes with this territory. Sometimes it’s a little easier than others, but it’s part of dealing with a child with a special medical condition.

Next. As I said before, it’s very rare to find a doctor that knows about your child’s condition, but pick the one that is willing to learn with you and never talk bad about a doctor that doesn’t know. You can say, “well, thank you very much. I appreciate your help.” Next time you make an appointment with a different doctor, so you don’t have to be with somebody that you’re not comfortable with. You’re giving the care of your child to somebody that you need to feel comfortable, and you need to feel like a team player. With that said, not all the doctors that are great, have great bedside manner. So, you have to be balanced there.

What is best for my child? Is he the expert? He’s the one that’s more knowledgeable and might take care of my child, he might not be the most sympathetic or empathetic person. But if he’s taking good care of my child, what is the most important thing? So, picking doctors, picking the medical clinic, the best hospital is a process. You might not get the first person at the first time, you might not find the first doctor that you like, with the first appointment. It’s a process. so don’t give up. You will find a doctor that’s best for your child.

But that said, you also bear the responsibility of knowing your child’s condition. It’s as important that you connect with other parents that are in the same position as you, with organizations that help children or families with your condition. Networking, it’s very important. I think that parents are the best resource. That’s why I think these phone calls are important because professionals know their area, but parents are all over the place, and they hear and they try and they go places. They have an immense resource list of information that can be very useful. So, connecting with other parents, it’s important connecting with organizations that advocate are very important. Reading about the information, and learning about the information is very important. So, that’s my piece. Anyone have any questions?

Sheila

No, that was really good. I had a question. Carmen, could you speak a little about building up not even knowledge, but confidence. Because, after all these years, there’s some doctors that it’s just really hard to even ask a question to. The confidence as a parent.

Carmen

Yeah, I think that is really difficult sometimes, because we see doctors as the eminence, like the person that knows things, and they’re busy. Sometimes if you said to the doctor, something simple, like, “listen, I know you’re busy. I know you have a lot of patients, but I really, really have these questions. And I really, really have this list of things that I like to ask you.” And if you go prepared, it’s a lot easier to ask that from the doctor than just going with like, “oh my god, I have so many questions, and I don’t know where to start.” If you prepare yourself to ask the questions, they’re more willing to answer. And the more you practice- it’s practice and it’s intimidating. It’s scary to see a doctor when you’re afraid because your child has something and you don’t know what it is, and it’s medications, and new treatments, and new words and it is intimidating. So, it’s practice.

This is something that your child has to practice because they are going to be going to doctors all the time. So your attitude toward this is going to be helpful too, because your child is going to learn from you how to deal with their doctors and how to advocate for themselves. Thank you.

Lilly

I’m Lilly and I’m going to talk about educational advocacy. I know that when you first hear about your child’s diagnosis, there’s a feeling of shock, of sadness, all kinds of things are going through your head. But, shortly thereafter, you need to start thinking about how to help your child. So, very early on, in all states, there are early intervention services, so that someone in a profession will come into your home and conduct an assessment to see what your child is able to do. And, also to teach you how to work more effectively with your child.

How to obtain early intervention? You generally can get a referral when you leave the hospital early on. A social worker will make the appropriate referral. You can take it from there. At that point, you may not know what your child’s needs are, but many, many professionals are able to work with you effectively. They will make recommendations such as interactive toys that can stimulate your child, appropriate lighting if the child has low vision, and what might work better. Also, teaching you techniques that can stimulate your child, because at that point, you may not know what can work for you, and what can work for your child. What is your child going to do? How are you going to raise this baby that has an impairment, which we never planned for? We always think that we’re going to have a “perfect child.” So, it’s a very emotional time. In addition, you might want to seek a little bit of professional help just to kind of sort out everything. So, that’s really important and that can go on up until the age of two. And then your child can start thinking about preschool.

Next slide. Preparing for school, K through 12. That presents another set of many important questions that you might want to ask yourself. Can my child be mainstreamed? Can he function in a regular setting? Or does he need a more restrictive environment where his needs are going to be much more focused on the particular disability? This has many pros and cons.

The pros are that if you allow them to go to regular school, they are integrated and working along with everyone else. Using services, they’ll pull them out of class and provide special tutoring and braille and teaching them how to use large prints and teaching them how to use the iPad. But that is removing them from the environment, which sometimes is not always the best. However, it can work.  Certainly it can work.

Then if you have them in a more restrictive environment in a specialized school, the good thing is that the children are all the same, they have basically the same condition. All the books and everything are available for them, so it makes it easier in many ways, but they are socializing only with kids that are like them. The world isn’t quite like that. I can talk a little bit about that because I’m a totally blind person. My parents decided that I needed to be in the mainstream. And there were times that it was wonderful, but also there are other times that it was very isolating. Because you don’t always know how to advocate for yourself as a kid. This topic is very important to me, because, unfortunately, my family didn’t have anyone to explain to them that they could advocate. That they could say, “No, this isn’t working for her, we need to do something else.” So, whenever I work with parents that have kids like myself, it’s always very personal for me, because I want to lead them in the best possible path.

The next one. What is an IEP? An IEP is an Individual Educational Plan. When your child is going to begin school, they have to do functional assessments, they have to do educational assessments, all kinds of things that may or may not mean anything to you, as a parent at that time. But you have to ask a lot of questions. How to prepare for an IEP meeting? Well, first of all, you should either bring a family member, or an advocate, that can help you to sort out all the information that you’re going to be getting. When they’re preparing, and when they’re presenting the IEP, you as a parent, have the right to say, I don’t agree with that. I think it could be a better way.

So, you know your child better than anyone else. The professionals will evaluate your child, but you know them better than anyone. So, if you feel something, you need to say it and take notes of everything that has been offered in the IEP. And also, know that at any given time, you can ask for an amended IEP meeting, so that if you feel that there are other things that need to be addressed, then it’s your responsibility to contact the district and say, “my child’s needs are not being met, and I need to meet with the service providers. So that we can come up with a more effective plan.”

The next one would be communicating with your child’s teacher. Yes, your child’s instructor is a professional. But like I said, prior to this, no one knows your child the way you do. Tell them what works for your little one. Tell them what you think would be most effective. How do they learn? And it’s not just the teacher, you have to also branch out and speak to other staff. For example, the school nurse, they need to be aware of your child’s needs, and your child’s problems. Also, when they’re out for recess and lunch, you want your child to feel comfortable, you want them to flourish. So, it’s your job, and it’s more than a full-time job. But you have to say, “I need your help with this. This isn’t working. So, let’s try to see if we can figure out a better way so that at recess, or at lunch, my child is included.” That’s very hard sometimes for kids.

And then I’ll talk about social integration. I think that’s the next slide. So, you have to identify activities that your child may be able to participate in. There may be some sports that he or she can do. Also, maybe after-school activities that may help your child to integrate into the whole school system. You also can reach out to other parents and plan you a playdate, play time, so that your child can develop some friendships.

You can also explore local resources such as, the Boy Scouts, Girl Scouts, they are many times open to taking on children with disabilities, and helping them to assimilate into the group. So, that’s very important for people to consider. The community resources that I wanted to point out is the American Foundation for the Blind has lots of lots of information that you might want to look through and read articles and ask questions. They’re very, very good.

The American Printing House for the Blind, also sells many supplies or gadgets that can help your child to work with, that would also be a good thing. The National Federation of the Blind is an organization that does a lot of advocacy, and they do a lot of legislation. So, if you want to know what’s going on with that system, you can certainly contact them. There’s also a school called the Hadley School, and they have many courses offered for parents. You can even learn braille through correspondence courses, and the courses are free, the only thing they ask is that you complete the courses. Whatever courses you choose, you must complete. So that’s a very powerful resource.

Also, the local Lions Clubs are very agreeable to helping the blind and visually impaired. So, if there’s a piece of equipment that you think your child might need, and it’s really very costly, and it’s beyond your reach, call the local Lions Club, talk to them about it. I’ve seen them do a lot of really good work. So that’s, something else to consider.

The last thing I want to talk about is self-advocacy. You love your kids, you want to be there for them, you know you can advocate for them. But at the end of the day, you need to teach them to advocate for themselves. You need to show them how to ask for help, and how to effectively make their needs known, and for someone to respond to them. Show them how to say, “I can do it, but I need some help.” Developing this skill is ongoing. You can start from day one, but even when they’re grown up, you always have to be there next to them, but you can help them to become a better person, if they can ask for what they need. They will get it, if they know how to ask. So, that’s my presentation. I welcome any questions. It’s a good topic, and a parent is always working, and I know how hard it is. I’ve had a child of my own, so I get it, but you’re always thinking about them and doing a million other things.

Woman

Could you just quickly explain what the difference is between a 504 plan and an IEP?

Lilly

I’m not an expert on that, but from what I understand a 504, a child can be visually impaired, but not doesn’t have to be legally blind. I don’t know, Linda, maybe you can help with that. I’m not too sure about that question.

Linda

I’m not that clear, either. But I’m wondering if it’s that some states use the 504 more than an IEP for the plan.

Woman

I think any school can offer either, but what I’m not clear on is- there are a lot of people that have had one or the other. But what I’m not clear on is which one has the most flexibility. It’s something that we can follow up with the district, too, I just was curious if someone happens to know on here.

Carmen

From what I’ve heard an IEP has more flexibility. That’s what I’ve heard. But I’m not an expert. I couldn’t really say any more than that. But from some of my parents, that’s what they have said.

Woman

I also have heard that.

Man

In West Virginia, the 504, you can get equipment, but not therapy services. So, you still get the stuff, but not the therapy, the vision therapist and things like that. That’s West Virginia specific. I don’t know.

Lilly

It may vary from state to state.

Woman

We’re Wisconsin, but that sounds familiar too. I’ll have to look into it a little deeper. I did have a secondary question to kind of go with that. You mentioned a lot of really great resources. One of the things that I struggle with, though, is I’m wondering if those are resources that are more so available in like urban areas, because in more rural communities we don’t have everything. So, what happens when a district doesn’t have a resource? If a district doesn’t have a TVI or someone to teach braille? What happens to our kids if they don’t have the resources?

Carmen

Well, that’s a very good question. Because yeah, there are some more rural areas where the services are not provided. I don’t know how some parents have dealt with it, but my family moved from Puerto Rico to the States, because they knew that I would have a better chance for a better education in the States, as opposed to living on a farm in Puerto Rico. So, that’s the way my family dealt with it. Not everyone has that ability to move in that direction. So, that’s a very hard one. You may want to contact the school for the visually impaired in your state and see what they recommend. That’s if they need the service, then somehow they have to provide it.

Lilly

Keep putting pressure on the district. But you know, different states have a Board of Cooperative Educational Services that provide a TVI or an O&N person to a large region, and the school district can contact, in New York, it’s called Board of Cooperative Educational Services, and they can contract with them to give the services of a TVI. Different districts can contract, as most districts don’t have their own TVIs, especially in rural areas. And then there’s the State Commission for the Blind, which may not be called The Commission for the Blind, it may have another state agency name. And sometimes they provide some services. I don’t think they provide a TVI, but they might provide other rehabilitation services. They do provide O&M in many cases, coming into the home though, not in the school.

Carmen

Yes, I have spoken to some people in other states and they say that The Commission for the Blind will send people into their homes to do mobility and RT, and some basic things like that. The Commission for the Blind in New York doesn’t do that. But we have many resources here that can provide those services.

Woman

it varies by state. Some states don’t even have a Commission For The Blind. Blind services are done by the vocational rehabilitation office. So it depends on the state.

Woman

I think they all have some State agency. But the level of what they offer varies.

Woman

Then my last quick question was, you mentioned the Hadley school, but I was wondering if you could actually just spell it out.

Lilly

Hadley. Okay, thank you. And they’re in Winnetka, Illinois. You might want to contact them, they’re very good.

Linda

Hadley School has online teaching. They’re just developing a new beginning braille class. They’re revamping their online braille class, to make it more easier, user friendly, and more state-of-the-art and it’s really good for parents, or anybody who wants to learn Beginning braille- sort of learning with your child. They have a lot of classes.

Lilly

You will really be able to help your child if you learn a little braille.

Woman

I think that’s a great question and there were a lot of different answers. It’s such a real problem. I’ve heard parents recruit people they know who might want to go to school to be a TVI in their area because they can go back to school. Or a lot of parents in our field, actually a lot of parents who have a child with a visual impairment and live in rural areas, they go to enough school that they figure they might as well just do the accreditation because their area needs a TVI now. I have heard of multiple parents who did that. I’m sorry, I wish that every community had easy access to orientation and mobility and TVIs and all of those things.

Carmen

Sheila, I’m not sure what happened to the chat window with me. But is there anyone asking questions on the chat? I cannot hear and it disappeared on me. I don’t know why.

Sheila

Somebody said you can reach out to your State Department of Education to see what resources they can point you to. Some have specialists that helped to develop the state teaching standards for students with disabilities or visual impairment. That was a comment on the question before. Thank you for that.

Woman 2

We are also in a rural area in South Carolina, and I contacted North Carolina which was the closest, biggest metropolitan area. And they had an O&M, so it was probably like a six-month process before they were able to come to my son’s school and work with him.

 Linda

This is Linda. I was working for The Board of Cooperative Educational Services that I mentioned, that’s in New York, and Connecticut contracted to this New York Cooperative Services Board for me. So, I went to Connecticut to see this one child. So, if the travel isn’t too outrageous, you might be able to get something from another state.

Sheila

Other questions?

Woman

You know, I like to say there is, since we have all different eye conditions, there’s all different levels of people with their children’s disability on the call. And either way, I think it starts with us as parents staying healthy. As you talk, Lilly, I think the presentation was so good. But I also know what happens, what can tend to happen, and it gets so overwhelming all the reading and then you go into another, just when you learn what an early intervention is, it is time to transition into another.

Lilly

It’s a lifetime commitment.

Sheila

It is, and, to know, like these calls, you’re not alone, everyone’s kind of going through it, you don’t have to recreate the wheel. That’s what this is about, you just need support in pushing that wheel. And there are people out there that will help you, you can reach out to one of us. Sometimes just to vent. Sometimes to get information, or like Carmen was saying, just good practice. I mean, we’re all different. So, some of us were natural born advocates, and some of us were not. And so all of a sudden, just because we have a child doesn’t make us a different person, we have to learn some of those skills.

Carmen

I think that all of us have to learn it. But you’re right, not everybody learns at the same rate, but that doesn’t mean that you cannot have somebody go with you who is an advocate to rely on. That’s why I think the support organizations are so wonderful. I have HPS, I’m legally blind. I wish my mom had other parents to talk to when I was growing up. I think it’s one of the best resources, that’s why these tele-calls are so important.

Woman

I agree. Yes. I agree.

Sheila

Any other questions or comments about advocacy from anybody?

Linda

It’s Linda- just what you mentioned very, very, very briefly, Sheila, is that in the midst of the advocating, the learning, the research, keeping track of all the medical records, following up with the school system- build in a little, tiny bit of time for yourself every day, if possible. If not every day, definitely every week, to keep yourself mentally and physically healthy. Everybody has told you this, your relatives tell you this, the doctors tell you this, you must take care of yourself because if you don’t, how can you take care of your child? That is really true. Keep that in mind and try to do a little meditation, or a tiny bit of yoga, turn on a video or or a TV show that has little exercise thing going on, or coffee with a friend. It doesn’t have to be that complicated. Yeah, sorry to build that in amongst everything else.

Carmen

And we’re only a phone call away.

Sheila

Yeah, I was just gonna say Carmen, do you have anything in closing?

Carmen

Yeah. Like you said, you don’t have to do this by yourself. You don’t have to be an expert. You don’t have to be good at it the first time. It takes time. It’s patience, it is asking for support, not being afraid to ask for help, and knowing that it’s hard. It’s not gonna be like, the first trial is gonna come okay. And it’s okay, we’re all learning. And what works for me might not work for somebody else, but that’s why we’re here to share and see, okay, that didn’t work. Let’s try something else.

Sheila

Lilly, do you have anything? Thank you, Carmen.

Lilly

Reach out to other parents because they can share with you and you can certainly feel more understood because they also have a child with a condition. So, it’s really so important not to feel alone. Feel that someone can listen to you because they’ve been there. And they and they may be able to shed some light on something that you may not be able to see, because you’re so immersed in the problem. And if someone can point out something to you that can help you. That’s where you need to be.

Sheila

Okay, thank you. Thank you, everybody. And we’re right on time. So, I hope everybody has a great evening. And like I said, if you have any questions, reach out to one of us, and we’ll be there for you. Thank you for coming tonight, everybody.